Charlotte Bevan, fierce advocate and activist, died at home January 13, 2014.
A mother of teenagers, wife of a farmer, parent advocate for parents of eating disorder patients, major contributor to the Around the Dinner Table forum, writer of short information films, Expert Carer for the Eating Disorders team at the Maudsley and Breast Cancer patient.

Wednesday, 19 June 2013

I haven't blogged for a while because I've been busy and not sure what to say. But here's a catch up.

I had an ultrasound today and it showed that the tumor is packing its bags and running away. Take that, hairy knees!

The reason I had an ultrasound is that I am getting another fluid build up in the shoulder, not unlike the ones that plagued me after my operation in February. There was a feeling that I should have it drained today as I was hanging around in the Day Unit, upsetting people by eating the amazing chocolate cake that darling C brought round (still warm) yesterday.

So I have to have ultrasound to see where they stick the needle in to aspirate it - sidenote: asking for a 'bigger' needle is likely to put patient's blood pressure up - which they did most successfully this afternoon. Sadly, it was not clear straw coloured liquid that came out, but blood. Which is good in some ways but slightly blows my cover on the whole 'I've been doing gentle hoeing in the garden and moving some pots around'. Apparently, just because I feel so much better, this does not mean I can resume normal operating levels of heavy lifting and vigorous exercise - sigh.

However, before all the good news, the wonderful Dr W had had an oncologisty type thought that maybe the chemo wasn't working so well and that was why the fluid was back. So she has ordered a CT scan for Friday. This involves drinking a very cold liquid that tastes like Pernod but doesn't have any of the pleasant side effects. The scan involves some kind of injection that makes you think you've wet yourself. All in all, not top of my list of things to do on a Friday afternoon.

The funny thing about chemo is that it is perfectly normal to eat through the treatment. It is somewhat counter-intuitive to hoff your way through sandwiches and cake and fruit salad, whilst receiving a treatment that is notorious for making your insides not function with normal parameters. I believe that early chemo patients were as likely to die from the side effects (particularly vomiting) as they were from the cancer. I was slightly put out when the ultrasound team were not keen on me continuing to eat my lunch whilst being ultraed and aspirated. Normal hospital protocols are turned on their head in oncology. I quite like the rebel aspect of that....

The major problem at the moment is edema. My hands are too swollen for my wedding ring and my toes are so swollen that they feel really weird. Flip flops are the only shoes I can wear (the ones without the thing between the big toe) but I spend all day with that odd feeling that there is something between my all my tootsies. There isn't. I know because I have checked, washed my feet endless and even used a mirror and a torch, just to make sure. They are just not fitting together properly due to the fact they resemble little sausages.

I find it hard to type because my fingers are bigger and don't hit the keys properly. There is a tendency to SHOUT at people because of CAPLOCKITIS as well but good friends don't seem to mind.

But the cancer is shrinking so hey, in the grand scheme of things, life ain't too bad.

Monday, 10 June 2013

I admit to procrastinating about this. I have been burying my head about it for a few months now and it still hasn't gone away. I have tried to ignore the issue and have positively discouraged others from publicising it or promoting it. But the fact remains I have to face it and an article today, from a politician I would normally cross a continent to avoid, has made me face up to it.

You will note that the first item on the agenda has me reaching for the Salt Gargle and (to steal an expression from Irish Up) makes me want to "take bitty plungers and suck my eyeballs out".

"A special focus will be on how Carers manage their feelings of self-blame, shame, disappointment and guilt"

Oh No! Panic! Should I be blaming myself for my d's illness? Should I be ashamed of her? Disappointed in her or myself? What precisely should I feel guilt for?

Let's reframe this for a minute

Breast cancer is a melting pot of genetics, biology and environment.

Should my parents blame themselves for my breast cancer? Should they be ashamed that I have breast cancer? Should they be disappointed in either me or themselves because I have breast cancer? Should they feel guilty that I have breast cancer?

I'd like to see a professional in the cancer field who would suggest such a thing. No, scrap that. Public crucifixions are not my thing.

Why, oh why, do people persist in returning to the same old, same old. Why does the stigma surrounding mental illness mean that Carers continue to be loaded with an extra weight of psychological burden? Why should carers of people with mental illnesses have to be exonerated of guilt for something they didn't cause and the patient didn't choose?

Lawyers huh? They usually get a bad press. However, I have been blessed by two wonderful ladies, G & H, (feel like I'm singing the Sesame Street alphabet here...) who have dealing with the Big Stuff for me.

Both have been protective, righteously indignant and fiercely furious on my behalf, whilst I have been too tired to fight and too sad to deal with relentless bullying and sneaky tactics.

My big bro ("Just sue the b@£$%^ds) is married to lawyer (another G!), who is of the same mind as G & H and big bro.

The other side are the sort of lawyers who give the profession a bad name, throwing out long words and veiled insults (some libellous) to a woman with cancer, who has just lost her mother, threatening court action and trying to scare me and my family.

I set it up with the help of the wonderful Miranda @mirandasmurmurs last Friday.

Miranda also did something clever with my phone so that I could tweet from there. Thank goodness she did. I managed to make a few mistakes (replying to Tweets as FEAST rather than me!) but enjoyed posting and sharing.

Then I signed myself out and now can't seem to sign myself back in on the big computer, so have to do everything via my phone.

I popped in to see her family yesterday and talked a lot about people being there for the family and because they loved S. I did warn about the occasional "Me Me Me" type, who always comes to funerals, claiming spiritual kinship with the deceased and boring and embarrassing everyone there with their overt displays - so unBritish.

The whole family are all going to be at the church door to greet people, not doing a seating plan and intending to have a jolly party afterwards, because S did like a nice party. The girls are not wearing black and veils and S's HWISO was in good spirits. It was very comforting to see them, unified and comfortable with each other. It's not that they were happy, more that they were together.

I was moved to tears by the support the children are getting from their friends and peers. H said that they hadn't had less than 10 for any meal, as various drifted in and out, teasing him mercilessly and generally buoying up the atmosphere. Two of the girls yesterday had flown back from their gap year travels to be there. With these sort of friends, I am comforted that A will be OK.

I was blown away by another friend, S, who lost her Mum a few years ago to bloody cancer, when she was only 14. She and I put on a comedy turn about the chemo ward. Afterwards, I held her hand and thought that if I could bottle her beauty, both inner and outer, I could put all Pandora's stuff back in the box.

Rather than being depressed, I came back energised.

Some of this may have been dregs of the adrenaline spike, after E took me out for a drive for the first time. She is good and calm but lacking in confidence. No bad thing for a learner driver. I am so proud of her.

There has been a bit of a hoo hah about the GCHQ spying thing. I am slightly inclined to roll my eyes and say that's GCHQ's job - spying. What are you so worked up about?

Having recently been appointed as a Moderator on the Around the Dinner Table forum, I occasionally have to do a bit of Googling. For the most part, the people who join the forum and post are parents and carers. We have quite strict rules about that sort of thing. We also have professionals and patients who read the forum and some are members, but do not post, excepting exceptional circumstances.

Now and again, we get a rogue spammer. The ones that make me smile are the ones trying to sell us diet pills. Obviously a forum for parents of children with eating disorders is going to be a HUGE market for you. Duh!

We also get patients who are desperate for help and pretend to be someone else. There is a core of old-timers Moderators and Mentors who are pretty good at getting a "spidey" sense of this, by the way they write and what they say. These people need further investigation.

It is not a job undertaken lightly. To be frank, everyone is taken on face value and trust is a big part of the forum. However, having had to do such an investigation over the weekend, I am surprised how easy it is to find people on the internet and quite horrified about what people reveal about themselves. It is not hard to go back 10 or 15 years and find conversations that would make me blush....

The internet can be a place of wonder, comfort and information for a parent in distress about their child with an eating disorder. It can also be a place for flaming and fighting and horrid encounters that leave one stuck with nausea at the cruelty on the one hand and deep deep pity on the other.

The internet is a good place. It is also a scary and cruel one. I, for one, am happier knowing that there are eyes and ears out there.

Saturday, 8 June 2013

OK, so I am going to start with hair. Anyone who doesn't know me will think I am obsessed and excessively vain about my hair but put aside your prejudices for a moment.

BC, I had good thick hair. Insulating hair. Lots of hair. I have done this chemo lark before and knew that my hair was going to fall out again and had sort of prepared myself for it. However, like childbirth, there are bits that you forget.

You sweat a lot through your head. We have all seen balding men with glistening pates on a hot summer's day, ineffectually mopping with a handkerchief. What you probably don't realise is that, underneath your crowning glory you, too, are sweating away. Heat regulation and all that.

One of the side effects of losing your head suddenly is that no one remembers to tell the internal heat regulatory thermometer thingy that your hair is gone. So, when you get hot, it is still set to pre-hair loss Defcon 4. The result is that you lose too much heat through your balding, sweaty pate and, even though it is high summer outside (and remember, you can't go and sit in the sun without wearing Factor 50 and a sun suit and even then, only for 5 minutes), you can find yourself literally shivering with cold in a very few minutes.

Chemotherapy gives you diarrhoea. Ergo, they give you drugs to counteract this which give you constipation. To be frank (and this is a one time only, people), my bowel and colon are mightily confused at having both at once. It is not comfortable.

Steroids highs and lows. If you have been on/are on steroids, you will know there are emotional highs and lows. Wednesday nights are a write-off as I am on hyperdrive. Thursdays are manic. Fridays are sad. Every single week. Nothing I can do about it. It is difficult for the family, especially on Fridays, as I am prone to cry about the smallest thing. I know that I am over-emotional on Fridays and try to avoid emotional situations. However, the smallest thing can set me off. I apologise unreservedly to HWISO and the girls for Fridays.

Nosebleeds are unattractive. I have about 5 a day. Having hay fever is bad enough. If I get a cold, I shall just lock myself away.

Eating: as a parent advocate for parents of children with eating disorders I am all too aware of the importance of normalised regular nutrition. However, the steroids make me "rip the head off the nearest child and don't worry about the bones" vampire hungry. Who needs to heat things up? Who needs to take the packaging off a packet of biscuits? I need food and I need it NOW.

Which would be fine, if everything didn't taste of salt. Literally. For two days, everything I eat tastes as if it is coated in salt. Not the odd pass-by with the salt spoon but a two inch crust of the stuff. You try being ravenously hungry but all the food is covered in salt.

Practising what I preach with regard to normal, regular nutrition is hard.

Hey Ho, at least I still have my nails and a few shreds of my sanity.....

Thursday, 6 June 2013

So I got to sit next door to the beautiful J again yesterday. She has an amazing wig and has sort of styled it and wears a scarf round it. She looked stunning.

She had been to see the reconstructive team at Chelmsford and seemed quite relived that they were not going to use her tattoo on her tummy to reconstruct her! It would be weird, I agreed. She seemed much soothed by them and I am glad. It is just shitty what she is going through.

Her lovely Mum was there and they have taken my advice (Phew) about feeding her up. Apparently, Mum can be found most days wandering around with sausage rolls or cheesecake on a plate, exhorting her d to eat. Bless. An image that gladdens my heart.

I felt so sorry for her Mum. She reminded me so much of me. Wanting so much to take away the illness from her daughter - quite happy to take it on herself. Trying to be too kind and too involved and the painful waves of sorrow positively radiated off her. I just wanted to hug her and tell her that I knew exactly how she felt. I couldn't. Too English and too many tubes!

I did laugh when we got on to Mindfulness Meditation. Mum said she wanted J to do it with her. I said that I thought J may find it useful but NOT if she does it with Mum. Mum said was she trying to be too helpful? J and I both said Yes. We all laughed.

M was there too for her blood transfusion and her lovely round husband came in to pick her up. They gladden my heart with their obvious love for each other and their gentle bickering.

I slept all afternoon, except for the bits when I woke myself up snoring. The anti histamine really did its work and I am less uncomfortable today. The lovely tea lady left me my tea, whilst I was asleep.

I had to nag my nurse (again) to go for her lunch break at 2.30. She said it didn't matter as she needed to lose a few pounds. I explained that skipping lunch wasn't the way to lose a few pounds. She injected the piriton pretty swiftly at that and I nodded off before I could really rant - much to her relief, I suspect, and the relief of the other patients. I had already gone off on BMI earlier that morning and the oncology department doesn't give out free earplugs.

All that sleeping meant I was wide awake for the FEAST Board Meeting last night (9-11.30 pm - not something I am usually awake for). I contributed. Way too much. Motor mouth me on steroids - probably not the ideal combination for my first Board meeting. However, I enjoyed it.

Apparently I am on Week 9 and have 3 more to go in this cycle, before I get a week off. I have sort of committed to going to France in my week off to help darling E drive this back. She says it needs brakes before we start. I say it is doubtful that we will be able to get up enough speed to need brakes. In my week off, I want to live a little dangerously.

Tuesday, 4 June 2013

So the sun is out and shows no sign of going in for the next few days. Whilst it is lovely to see it and fills your heart with joy, it really pisses me off.

Why?

I love the sun and I love being outside making a bit of Vitamin D. However, with chemo, it is inadvisable and you burn very quickly so I make 5 minute "sitting in the sun with a cup of tea" forays.

With the heat come the hives. How do I explain severe allergies to those who have never had them? Well, here's my day.

It starts OK. I sleep with my bedroom window open and my room is cold. I mean really cold. So I wake up OK. Once I get out of bed, it begins. Very slowly but it starts. For instance, I am sitting on my typist's chair at my desk. I can feel the material of my chair chafing against my thighs through my pjs. My arms have got welts in them where my cardigan is against my wrists and my neck is itching where the collar of my t-shirt touches it.

By mid-morning, my (normally very comfortable Spanx) bra will feel like it is two sizes too small and be digging in. The same goes for my loose linen trousers (that I have to wear a belt to keep up) and my knickers feel like they are filled with sand.

By lunch time, I am squirming and scratching.

By the evening, the family is complaining about all the doors and windows being open (cold - I like cold!) and my hands and feet (wearing shoes is NOT an option) are almost numb with cold. They are, however, bright red and unbearably itchy.

I eye the parmesan grater and the mandolin in the drawer - deluded thoughts of "if I just take my skin off, I will be OK".

All this is interspersed with the "moisturising" routine. I spend my life being unable to open a door or hold on to a mug of tea because I have "greased up" to stop the itching.

Or on the loo, because I drink liquid solidly all day to keep myself hydrated and my blood pressure from dropping.

I can't wear my wedding ring or a watch because of the swelling. I am seriously distracted and bad tempered. I resent everyone and everything.

Monday, 3 June 2013

I have become involved in a debate about the influence of the media on our relationship with food. Let's get a couple of things straight.

I don't believe that you can cure cancer via what you eat. I do think a healthy nutritional intake can help in treatment and can lower your risk factor for developing cancer but what you eat does NOT give you cancer.

I don't believe that the media "causes" eating disorders. I do think that media influences can lead to behaviours that lead genetically pre-disposed people to develop an eating disorder: dieting, overtraining, illness, "healthy eating leading to cutting out essential food groups to name but a few.

However I DO believe that we have a very unhealthy relationship with food, that urban myths abound and that the general population don't understand basic nutrition. For example, I was sent a cutting that said if I had eaten more lettuce, I wouldn't have developed breast cancer. I am a great eater of lettuce. I love lettuce. If I ate much more lettuce in my life, I would have turned into a rabbit. Eating lettuce does NOT prevent breast cancer. That is way too simplistic.

Other urban myths that I have come across in the last week include:

eating a piece of chocolate biscuit cake will make you put on weight. NO, IT WON'T. If all you ate was chocolate biscuit cake for the next 3 months, you would likely be admitted to hospital for malnutrition.

Eating fat is bad for you: No it isn't. You NEED fat as an essential part of your daily intake. 70g of it, if you are an average (5ft 4) woman. I understood from Professor Treasure that fat runs the brain (simplistically put, but you get the idea). By the way, this does not mean that brainy people eat more fat.

Superfoods prevent cancer. No they don't. They may lower your risk of all sorts of diseases but they don't prevent them. Risk factors for cancer do not include not eating enough hazelnuts as a child.

Sugar causes cancer. NO IT DOESN'T. This does not mean you should mainline sugar but it also does not mean that you should cut it out of your diet entirely.

I found the "Frequently Asked Questions" section of the MacMillan site both depressing and sad. Do people really think that, if eating organic food prevented or cured cancer, it wouldn't be part of the treatment regime across the world?

I do believe that the media is responsible for some serious misunderstandings about nutrition. I do believe that diets don't work. I do believe that urban myths about eating and food are peddled by the media. I do believe that this can lead to unhealthy relationships with food and can damage people's health in a myriad of ways.

I don't believe that the media causes eating disorders anymore than I believe that what you eat causes cancer.

A perfect storm of genetics, biology and environmental factors lead some people to become ill and some not. I say this as the daughter of a man who smoked 80 Rothmans a day for 50 years and is still going strong(ish) aged 80.

I also believe that my generation has a terribly unhealthy relationship with food and our children even more so. The key is to stay fit, eat and drink in moderation and stop punishing yourselves for eating chocolate biscuit cake every now and again.

Sunday, 2 June 2013

"Ugly is a field without grass, a plant without leaves, or a head without hair."Ovid "The Silent Woman"

I have moaned before about losing my hair. It is, for me, one of the worst side effects of the chemo. It is also very psychologically damaging as far as I am concerned. Not because of vanity. Vanity is not my bag. It makes me feel vulnerable and the centre of attention. People really notice when you have no hair. You tend to get that sympathetic, head-on-one-side, aren't you being brave look. I don't want to be brave. I want to keep my hair.

I have suffered from patches of alopecia all my life, when under extreme stress. But I have never lost all my hair until chemotherapy two years ago.

My dear friend E told me the other day that she thought I looked amazingly powerful when I was bald. I took comfort in that. She can say things like that to me because she has had alopecia too. From other people it doesn't ring true but she understands how utterly naked and vulnerable (and cold) one feels without one's hair.

The most shocking thing about losing your hair is just how much you have. Once it starts to fall out, it seems to be everywhere. Having a shower means unblocking the plughole at least twice. Your pillowcase needs changing or hoovering every morning. Your coats and jumpers grow fur collars during the day. The floor in the bathroom and the hair brush are a mass of swirling feather-like tendrils.

And yet there is still more to come.

You run your fingers through your hair and come away with clumps in your hand. You push your sunglasses on your head and dislodge another wedge from your brow line. You turn your head to the side in the wind and watch wisps catch in the breeze and disappear.

I think the worst moment came this morning when I realised that my eyelashes are going. Desperately waving "thickening" mascara at them this morning to cover it up, I found myself brushing individual lashes with each sweep.